Turbt last Wed

[Nelson]

Hi, just found this forum while recovering from surgery,  I have a catheter till Wed. Surgery went well and 2 weeks till pathology report comes back. I have had a lot of blood clots passing, usually in large groups. Hoping this is normal but things have happened fast and don’t seem to get a lot of information from the surgeon.  Anyway glad to find your forum, 57 m from Saskatoon, had no symptoms but microscopic blood particles were found in urine test. Ultrasound,  CT scan, cystoscopy and surgery have happened in the past month. Trying to rest, glad to find your forum.

[Jack Moon]

Welcome Nelson, I also had large blood clots during this 1st week following my 1st turbt. Any questions you may have, we are very happy to share our experiences. Keep us posted on your results from the pathology report.
All the best,
Jack
Forum Moderator

[Nelson]

Thanks Jack, its nice to hear others experiences and not seem to be façing this alone. I will update when I get my results.

[marysue]

Hi Nelson:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  We’ll send positive thoughts and prayers that you get favourable results from the pathology.  Please keep us updated and let us know if you have any questions.  ((((HUGS)))))

[Nelson]

Hi, its been 4 weeks since my TURBT and still waiting for results, I called yesterday and was told things are moving slow because of the Xmas season delays.
Feeling better the past week as the blood clots and bleeding have stopped for the most part. Now just continue the wait for results. That’s my update. Thanks!

 

[Nightingale]

Thanks for the update Nelson.  My fingers are crossed – hoping you hear soon and that the results are good and clear!

My best,

Forum Moderator

[Darknight]

Hi Nelson .. I hope your results are positive.

I had my TURBT (Sept 2018) and will have all follow ups at Princess Margaret in Toronto which is under the University Health Network (UHN). To their credit they’ve implemented a patient portal which basically allows one to log in and see all of their information, including copies of notes, test results, etc as they’re produced. Despite a pathology follow up booked 5 weeks after my procedure, I saw the pathology report as soon as it was ready via the portal maybe 10 days post surgery. I’m not sure if many other hospitals have gone digital to this degree, but it has been immensely helpful as I literally have all results and documentation with me at all times. Check to see if your hospital may have something similar.

[Nelson]

Hi, finally got my results, almost 5 weeks, tumor was high grade non invasive, that’s good news the surgeon tells me. They are going to take another look with the cystoscope to make sure everything looks ok and another CT scan. I will then start treatment of BCG if all looks well. Thanks for all your messages!

[Nightingale]

That indeed is good news.  Glad to hear!  Wishing you well with the Cystoscopy and CT scan.

my best,

Alex

Forum Moderator

[marysue]

Hi Nelson:

Glad that you got the news that it was non-muscle invasive.  Good  luck going forward with the BCG treatments.  ((((HUGS))))

[Nelson]

Hi, had my second BCG treatment yesterday, the first one I had no issues at all with but after yesterdays treatment I had blood in urine, clots, headache, nausea, vomiting and pain when urinating. I have read that some of this is normal but wondering if there is a reason to why so much different than the first treatment? Thanks so much.

[marysue]

Hi Nelson:

That was a rather extreme reaction to the BCG.  I suggest checking in with your uro/medical clinic before having #3.  Reactions can be very different between treatments and between people. There doesn’t seem to be any real answer for this.  Some people have very little reaction all the way through – lucky dogs, some have a gradual increase in side effects, others have extreme reactions, and still others have a variety of reaction from treatment to treatment.

I fell into the latter two categories.  When I did my initial set of 6 in 2008; #2 and#5 were dousies and the others not so much.  When I had a repeat set of 6 after my second TURBT in 2010, the pattern repeated itself but with much stronger overall reactions.  I figured it was due to the fact that my body was now sensitized to the BCG.  The 3 sets of 3 that followed the second set of 6 got really intense with #2 in each set being the worst.  I was fortunate that I didn’t experience any severe bladder reaction but my muscles and joints were something else.  After discussion with my uro, he agreed to cut the dose of my last 4 treatments to 25% of the original dose in hopes that the muscle/joint pain would be less. It helped some.  He didn’t want me to quit but I was at the point that the dosage of pain killers was having to constantly be increased so I could function.

Usual side effects can be low grade fever, some chills, muscle/joint aches and pains, fatigue – all that make you think that you have a good dose of the flu.  Most people complain of the fatigue. Some people also get bladder irritation and may pass a bit of blood after treatment because the lining of the bladder gets inflamed/irritated from the BCG but that should clear within 24-48 hours and definitely before the next treatment.

If you have a high fever, extreme chills, lots of blood/clots in the urine and severe pain of any type you should report that to your doctor before proceeding with the next treatment.  It is important to check to make sure that you haven’t developed an infection in your urinary tract because it will need to be treated with antibiotics before continuing with BCG.  Hope my info helps.  Best Wishes going forward.  BCG is not for the faint of heart.  ((((HUGS)))

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